BACKGROUND TO "I WISH I WERE A LEPER"
In the first few days following Margaret’s death, I was distracted by all that needed to be done for her funeral. When that was over and I was alone in our home, I was rocked by a level of grief that shocked me. I had read Elizabeth Kubler-Ross and David Kessler’s book, “On Grief and Grieving” and had some understanding of what they term ‘anticipatory grief’ that I had been experiencing in the past 18 months to two years of Margaret’s life. I had now to retrace my grief, deeper now that she was no longer physically present to me.
To this day I am not sure why I thought so, but I had a sense that if I could retrace our journey with Alzheimer’s I would somehow be strengthened by that, be able to accept her death and ‘move on’ in my life. Luckily for me I write a daily diary – about 200 to 250 words each day. Thus I began to reread my diaries. This was no easy task. Many was the day I found myself unable to continue to read as the story unfolded before me.
As I read I began to take note of significant passages, some of events I had almost forgotten about, others outlining the pain and suffering we both endured. I found myself wanting to write about these events as I read. I thought, apart from helping me, our children would not have known all that Margaret and I faced, particularly in the first few years when we tried to shield them form it all. My initial audience was simply our daughters and their loved ones, husbands and children.
Enter my two sisters, Colleen and Helen. Sisters can be persuasive. When they found that I was writing about our journey they prevailed upon me to have access to it at some time. Finally I gave in and read it to them in serial form both to gain some feedback about the journey and my written outline and as an editing tool. They found they had little idea of the journey but counselled that its telling would be of great benefit to others undertaking a similar journey.
I was now ready to pass on a copy to each of our three daughters to read. I was anxious to have their reactions and any editorial suggestions they had to make. In my mind this would ready the manuscript for publishing just for the family and a few close friends. Our daughters though could see the telling of our journey as a great aid for others.
To take what I had written to a wider audience was not a decision reached easily. I had to be prepared to open up our private life – warts and all – to the public. I was very uneasy about doing so. I continued to wonder whether others would indeed be interested in our journey.
Finally, two wonderful women who had spent many years working in aged care and especially with those suffering from dementia, Catherine and Annette, read the manuscript and counselled me to seriously consider publishing the book. Later Fr John Chalmers endorsed such a suggestion. So armed, I carried out several more edits and then set about the process of having the manuscript published.
Vince O'Rourke
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